Dis Breast Cancer Survivors Part IV - GAGWTA

[Dancind]

You know, after doing some reading around the web, I'm starting to think that a trip in October might be optimistic.

For those of you here that completed treatment, surgery, chemo, etc, how long did it take?

I know everyone is different, but I guess I need to brace myself. For starters, the MRI with contrast on Monday sounds like it could be awful!

 

[luvmarypoppins]

Good evening ladies

Diana - welcome but sorry you have to be here. The ladies here are encouraging, have a wealth of information and are very supportive. They inspire me. I have another type of cancer (thyroid), so they have adopted me.

Glad your dh is going to be with you. I fiound my dh was the greatest. Always another set of ears and such a good help with everything medically. My Prince Charming. Bring a notebook etc. Dont be afraid to ask for help and take it when people offer it to you. My church family cooked alot of meals for me.

It tok me a whole year to get back to disney post surgery, but I had lots of complications and 7 surgeries. I would say a trip is definetely something to look forward to. Maybe make sure you have trip insurance etc.

Wisihing you all the best.

Elizabeth - hope your cousin can be made as comfortable and pain free as possible. I am sure this is such a heart breakibg situation for all of you.

Sha - in R.'s arms is a good place to be

Lisa - how are you feeling?

Laurie - an internship for your dd is great. That is how ds got his current job. The lst internship did not turn into anything permanent but it helped get him the 2nd job for sure, great resume experience.

I am still coughing like crazy. (Laurie I think these are Seattle germs that ds22 and dh brought back with them) Dr. waste my time is off tomm., so the only day I could go if there is an opening is Friday. I dont know what he would even do for me. He is not too keen on antibiotics and when he gives you them, its the mildest stuff, nothing heavy duty etc. I am limited in what I can have because of my allergic stuff, only keflex,cipro and avelox I think work the best.

GAGWTA.

 

[snappy]

Denise, I would check with your doctors about your October plans. Let them guide you. I waited about about 9 months before taking a trip but I only had the mastectomy, no radiation or chemo.

I am sure others will chime in.

Sha jazz fest is last weekend in April and first weekend in May. Enjoy your visit with your sweetie.

MaryAnn, thanks for the info about your son's internship. Good to hear they can lead to a real job.

 

[jackskellingtonsgirl]

You know, after doing some reading around the web, I'm starting to think that a trip in October might be optimistic.

For those of you here that completed treatment, surgery, chemo, etc, how long did it take?

I know everyone is different, but I guess I need to brace myself. For starters, the MRI with contrast on Monday sounds like it could be awful!

My mom had stage III lobular cancer. She was diagnosed in March and they started her on Arimidex to shrink the tumor. She had her lumpectomy in June, started chemo in July. She had 4 infusions of A/C that were every other week, then she started weekly infusions of Taxol (that switched to Taxotere because she didn't do well with the Taxol). They had said 8 infusions of that, but they stopped after 6. That put her right around Thanksgiving. She did 6 weeks of radiation that started in January. I think it would have been sooner, but they wanted to do some sort of targeted radiation and the insurance was being stupid about covering it so there was a delay. From diagnosis to end of treatment was just shy of a year.

She is doing well now. Just some lymphedema (they took out A LOT of lymph nodes!) and some neuropathy in her hands and feet.

It is a long process. Think of it as a marathon, not a sprint.

 

[snappy]

I was lucky enough to leave work early and meet Sha to shop a bit and have dinner. She introduced me to the Pandora store and I returned the favor at the Apple store. We had fried alligator and boiled crawfish later at my favorite local joint. Good times.

 

[Dancind]

Thanks for the input. I can "bank" the week at our timeshare to use next year, but we have tickets for a major wine tasting event that are non-refundable. If nothing else, the drive from NM to Napa might not be easy for me. I think I will look into online trip insurance.

I'm cutting my wine consumption WAY back anyway.

I will learn names eventually. Looks like Sha and JSG are both daughters of survivors?

MaryAnn, I am sorry you are going through so much. Sounds like you have a very supportive family, and a son you are very proud of.

And Snappy, love the pictures of your pretty redhead. Is she your only?

 

[CherylDan]

Diana, sorry you are here, but welcome. I think you will probably have to wait and see what your treatment plan is going to be before you can figure out your October vacation plans. I see you also have an Alaska cruise planned for next year....we are going the first week of June, can't wait.

Laurie & Sha, glad you were able to meet up, sounds like you had a good time.

LMP hope you are feeling better.

JSK, glad the tutor is helping. Sorry to hear that things are not going well with your cousin.

Lisa, we're you able to get the oxygen? I hope you are doing better.

Our Boston DD is here for a visit this weekend, so that is nice. DH picked her up tonight from the airport, she's flying back Sunday. Her DH was in Ireland for work this week, but apparently didn't get to see much other than the office and airport. Bummer!

GAGWTA!!

 

[snappy]

Cheryl, I really enjoyed seeing Sha. She is indeed planning another race, and I think I will participating. Hey, I already have the t-shirt, lol, and it sure its a wonder to behold.

Glad you will have your DD with you this weekend.

Diana, the redhead is my youngest, at 16. The graduation that I am obsessing over is for our middle DD, graduation from college and she is going to be 22 in a few weeks. Our oldest is our son, age 23.

We did not start our family until we were in our mid 30's so we are long at the party.

I just to think they kept us young, now I wonder? Having kids does motivate you to pull out all stops fighting cancer. Timing of the diagnosis was not particularly good for me as I had the biopsy immediately prior to DD16's first communion and opted to delay the surgery until after DD21 graduated from 8th grade (it is recognized with a lot of fanfare here).

Although it always comes at an inconvenient time I suppose. You are never ready for this diagnosis.

I like the idea you received about the trip insurance. Taking that step will relieve your anxiety on the trip thing so you can focus on your treatment. The uncertainty about what your facing is very unnerving. One less uncertainty=a very good thing.

 

[PatsMom]

Hello ladies! I have just caught up on all the posts. Diana and Karen, welcome to the survivor's club - the one no one wants to join! I am like LMP - I am not a breast cancer survivor, I have bladder cancer but these wonderful ladies have allowed me to join the group anyhow. You will find their support and knowledge to be very helpful.

Finally got my cortisone shot for the bursitis and am feeling better. I have to do some physical therapy now. I need to call and schedule it but I am having a cataract removed from my right eye on Monday so that is the priority right now. I have decided that I can only deal with one medical issue at a time or I get overwhelmed! I am still having issues urinating. And on top of that my pre-op physical showed that I am anemic again. I need to talk to my primary care to see where she thinks I should start with that one. Probably back to the urologist to confirm that the bladder cancer hasn't recurred. Then off to the oncologist to figure out why the anemia.

My daughter comes home on Tuesday. She's had a great semester in France but is ready for the USA again! And she is very happy that she will be home in time to go to the Flower and Garden Festival with us.

GAGWTA!

 

[luvmarypoppins]

PatsMom - praying your cataract surgery would go well. Sorry you are still dealing with the anemia issues. They figured out my bone marrow just shut down for some unknown reason. It restarted after I had the 3 blood transfusions and then the B12 shots too, lots of them. They think it was totally unrelated to my cancer. Hopefully they can figure out your mystery too. This is when I also had to have the colonoscopy and endoscopy to rule out internal bleeding. Wishing you all the best.

When will you be in DW? We will be at the BC May 17-23.

Cheryl - hope you have a wonderful time with your dd. Enjoy your visit

Laurie - so glad you got to spend some time with Sha. Sounds like some adventurous eating!

Lisa - yes, I too hope you can get the oxygen, remember my little number rant comment to you and its your body and how you feel??? Hate when stuff like that happens.

Diana - one day at a time or else it gets overwhelming sometimes. Dont be afraid to ask your care team any questions.

Linda - we need an update, How are your kids?

I am starting to feel better. I even cooked dinner last night. Still congested. And so tired.

27 days till our trip. Boy I need a vacation.

GAGWTA

 

[Sha]

May see Laurie later today too. R has his car right now, because he wasn't sure about weather. He will be home at lunch time. I will wait to eat in case Laurie I go back out. Was nice! I will say, I will not suck the head(s) of crawfish. I tried one. No thanks. LOL The tails are good... (if you were in my head you would be ROFLYAO)

 

[smiley_face2]

Hi all, since the big DIS server move I can not stay logged in and I don't get post notifications etc. very frustrating. Anyway...
Diana, I also had stage 2 invasive ductal carcinoma. Mine was triple negative and grade 3 on the aggression scale. I was diagnosed in late november 2010 and due to the Christmas holiday did not have my sugery (lumpectomy) till January 7/2011 I was due to start my chemotherapy about 4 weeks after but 3 weeks after my surgery our son was killed ( I won't go into all the details here, you can read my previous posts about it if you like ) and it took a while longer for me to begin my chemo. I started that on Feb. 23 2011. It was extremely hard for me, both physically and mentally, I had to take a break from the chemo twice, and they lowered the dosage by 1/4. I ended up in the hospital a couple of times for treatment of symptoms, but I made it through and finished on July 28 2011. that was a wednesday, by sunday we were on the road on our way south to California and Disneyland. I needed a break and change of scenery before starting my radiation. I had no hair and had lost about 35 pounds, but we had a very nice and much needed break anyway. I could not be in the park from 8 am to 12 pm like I used to do, and so many times my mind was telling me go go go but my body would not co operate!! lol... when I returned from our holiday 2 weeks later and went for my set up for my radiation I pointed out to the radiation oncologist that the end of my scar seemed to have grown bigger, she did a biopsy on the spot and the next day called to say it was the cancer back again so a week later I was in surgery again, the tumor had grown back slightly bigger than the original one while I was on chemo!! grrrrrr (2.5 cm was the first one, 2.7 cm the second) they decided it was a surgical failure due to close margins from the first one as apposed to a reoccurance. So I had surgery again, this time the (new) surgeon got excellent margins and I was into my radiation about 5 weeks later in Ocotober 2011, went for 20 treatments (the 5 last sessions were "boosts" which are special targeted type radiation treatments) going 5 days a week. I finished up after the 1st week of november and one month later on Dec. 8 hubby and I took our 2 oldest grand daughters (7 and 5) down to Disneyland for a week. We took it easy, but managed to ride all but about 3 rides, and saw pretty much every show. It was really a wonderful trip, I have posted some pics of it back further in this thread. Anyway, you just have to see how you are feeling. Even though the trips were not like we used to take, they were still very enjoyable and very healing as well. Keep as much of an optomistic positive attitude as you can, and try to keep a healthy life style. I cut out sugar and alcohol completely as I did not want to "feed" the cancer. I hope things go well for you, and I hope you can make your trips!

 

[luvmarypoppins]

smiley - always love your insights and posts.

Well I am doing the dance. Ds20 got accepted into the comm. college nursing program. That is an RN program, but he is happy, PTL! So now we just have to wait to hear about the State Univ. Hopefully it should be this week. Then he will have to make a final decision.

Today he is going for his CPR lifeguard recert stuff with first aid and aed etc.

Its bad timing but he needs it to start lifeguarding memorial day week end, but then he will have to take the more advanced BLS course for nursing that is like 8 or 9 hours that we have to pay for before he can start the nursing classes.

Wow the stuff he needs physicals, fbi checks, etc. etc. Makes my head spin. Just tons of paperwork.

Dh just informed me his old office mates wife just got diagnosed with bc, She has 2 lumps closer to her shoulder /upper chest??? Does this sound right? She is going for a consult at Sloan Kettering. She was originally at the hospital that misdiagnosed me. Glad she got smart too and got out of there!

Off to do stuff with dh today, Have a great day everyone

GAGWTA

 

[snappy]

Congrats to your DS 20, Mary Ann!!! Sure sounds like a lot of paperwork. I bet he is on cloud nine though. Does he have a first choice?

As to the wife of your DH's office mate, the way location is described with breast cancer is by quadrants. There are four quadrants, and then there is the center. I think it goes by upper outer, upper inner, lower outer and lower inner. At least that is what I remember. Maybe near the shoulder is the upper outer?

Glad she is going to a SK, they have such an excellent reputation.

I found a grad present for DD21, very nice suitcase on sale at TJ Max, something for me to wear for the two graduation events, the dinner, and our party the next day. I figured I would have to change outfits not he first day since it will be HOT, and Superdome events mean beaucoup walking. Right now I am just praying for no rain.

I need to shop for DD16 for clothes and shoes for both graduation and our WDW trip.

Missed seeing Sha yesterday between my one to one appointment, my shopping in the vicinity, and shuttling DD16 around from school and work. I was able to see mom as I had bought some supplies for her and needed to drop them off. Mom seems frail but her mind is excellent, except for making decisions on the little stuff.

That is what we are for!

Busy organizing the albums for my slideshow. What a project! It is a good thing I realized that scanning in ALL of our non-digitals was not an option, my trainer yesterday said iPhoto can crash when you get close to 20,000 pictures. I am close to 10,000 now. He suggested purchasing more sophisticated program Apple sells- Aperture. My BIL steered me away from that one, he bought it a few years ago and found it too complicated.

I amy have to wait a while to tackle it.

GAGWTA!

 

[PatsMom]

Mary Ann so glad to hear the good news about your son. And also happy to hear you are feeling a bit better. You've had a long and hard fight and you are kicking cancer in the butt! Way to go.

I am going to Disney May 5 to 12 so I think I am missing everyone elses trip this time. It was so nice the year I managed to meet up with you, Snappy and Sha! We could have a reunion. Maybe in the fall for Food and Wine. I don't have my exact dates yet but it will be late October.

I am kind of discouraged about the anemia. I am sure we'll start with the obvious - ruling out another bladder tumor. Then the upper and lower scopes. Although I had those done a year ago and all was fine. Then off to bone marrow biopsies. As my hero, Dory from Finding Nemo, says - Just keep swimming.

 

[Dancind]

Smiley, thanks for sharing your story. I don't know all the details yet, but it sounds very similar. I have read the story about your son, and I am so sorry. That is much worse than cancer, I think.

I have already spent several years in poor health and pretty much non-functioning, until I figured out that I had chemical sensitivities from bug spray exposure at work. That was about 10-12 years ago.

Then, last year I was very run down and was diagnosed with Sjogrens, which is similar to Fibromyalgia. I have changed my diet and was really feeling like myself again, and this happened.

To be honest, because of the autoimmune stuff and chemical stuff I am thinking I'm going to turn down radiation and chemo. I'm not convinced they will add many years, and my quality of life after would be not good at all. It's really helped with the anxiety to come to this conclusion.

But, we will see how convincing my doctors are next week. I also have an appointment with an Integrative doctor, but not until May 10. They are very busy, it seems. Has anyone consulted with one? They keep track of all the OTHER ways to kick BC's butt.

I do wish I was at WDW! Or at least DL! While I still feel ok. The weather here is gorgeous today, would be perfect for a park.

LMP, good news about your son!

Snappy, wish I had a suggestion about the photos. I am still learning my Mac, and usually have to catch DD in a good mood to get her to help me with stuff. I think maybe I have some leverage now, she is being very nice!

 

[OceanAnnie]

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[dis-happy]

Hope it's okay to post here; I'm a cancer survivor (high stage, rare gynocological cancer) from 22 years ago. While my treatment didn't include radiation, I did have a ton of CT scans to my chest area where they were monitoring 2 lung mets at the time. More recent studies have come out stating the risks from all those CT's is greater than previously thought. I'm on par with someone who works in a nuclear power plant.

Anyway, I try to pay attention to my body. Earlier this year I had some strange symptons that led my primary to do an MRI of my head to rule out tumor. I passed that one. Then I went to the gyno for my annual and told her that I noticed one breast leaked occaisionally. Really thought she'd shrug and wait until my regular mammo was due in May. Instead, she ran a bunch of bloodwork and had me scheduled for a diagnostic mammo in 48 hours. I also had a consult with a breast specialist/surgeon the same week (gyno on Mon, specialist on Wed, mammo on Thurs). Surgeon ruled out blood in the fluid with a special paper test and was reassuring in that he didn't find any lumps. He changed my diag. mammo from one side to having both sides done.

So I went in a little over a week ago. After the diag. mammo where I was painfully squished like never before (and I've had diag. mammo's before, this was way worse....) I waited around. Then they told me I had go to u/s. So they saw something. The u/s tech located something strange and left the pic up when she went to get the radiologist. It was circular, with a spot in the middle. The radiologist spent some time looking around and told the tech she didn't think it was anything. She said I have enlarged milk ducts. Spent some time questioning me re. whether there were signs of blood in the leadking fluid. I said no from the test the day before. She also noted that there's not history of b/c in my family. In the end they cleared me to go unless things change or get worse.

My concerns:
a. that side STILL hurts, a lot.

b. no one seems to consider my previous CT exposure a risk factor, but I think it is, especially with the 20 year time lapse; while I've mentioned it to my gyno and the breast surgeon, I forgot to mention it to the radiologist

c. no one can tell me what is causing that side to leak. prolactin test and thyroid test came back normal; but something must be causing this

d. apparently there's another test that can be done where they look for cancer cells in leaking breast fluid---wondering if anyone here has any experience or knowledge of this??? should I call back breast dr. and ask for this test? or just wait and see if anything changes

e. while I'm peri-menopausal in age, up to now I've been Miss-28-days-like-clockwork up until March. Now I'm on CD 50 and I *think* AF might be starting today, finally. Seems strange and I wonder what is going on hormonally and if the breast changes and my hormones are connected.

Would welcome any thoughts y'all might have....

 

[Dancind]

Dis-happy, ask for a second opinion. You can take your test results to another doctor, check with your insurance provider for an ok and maybe a recommendation.

 

[snappy]

Second opinion is good idea. May help your peace of mind